Schizophrenia: Does Talk of Genes and Brains Really Stop a Mother's Blame?

06/09/2012 17:08 BST
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Updated
06/11/2012 10:12 GMT

In the bad old days of the 1960s, disorders like schizophrenia or autism were often believed to be the result of poor parenting, leaving mothers to carry most of the blame. But now we have entered the brave new, hi-tech, no-fault world of genetics and neuroscience; a world in which schizophrenia, according to America's National Institute for Mental Health (NIMH) is a "chronic, severe, and disabling brain disorder."

Brain and genetic disorders are no-one's fault:no-one, certainly not the family, is to blame. The concept of the guilt-ridden mother has been relegated to history books and horror movies... Or so the mental health establishment tells us.

Schizophrenia is one of the most stigmatized of mental health problems. That we have finally moved beyond an era in which the medical establishment made countless distraught family members culpable for their relative's schizophrenia is undoubtedly something to celebrate.

As the historian of science Ann Harrington has put it: parents "deserved an apology" for being put in the hot seat during this "traumatic chapter in the history of psychiatry". But does the story about the triumph of the no-fault model of schizophrenia as a genetic and brain disorder hold up in the face of reality? Do those who would appear to have the most to gain from it - family members - buy it?

Our research unit, the Service User Research Enterprise at King's College London, is one of the largest units within universities in Europe to investigate mental health services, treatments and models from the perspective of people with mental health problems and their carers. The priorities and perspectives of mental health service users and family members are, we believe, likely to be different from those who are solely academics, clinicians or mental health staff.

We spoke to 19 relatives of people with a diagnosis of schizophrenia to find out how they explained the presence of schizophrenia in the family. Did they talk about brains, genes, or something else? They certainly used the words genes and genetics a fair amount when they spoke to us, but genes were far from being the whole story: family members spoke about the impact of divorce, of traumatic events inside and outside their family, and of racism, immigration and drug-taking.

To use one woman's moving account, genes combined with "family dynamics, plus current affairs going on - the twentieth century was a funny time - and some real catastrophes happening in the background which were quite terrifying, and a bit of marijuana in there too."

Family members' use of what we call 'gene-talk' was an attempt to move the blame away from the mother. After all, if you provide a story of genes being passed on through generations, the schizophrenia did not originate within your own, nuclear family. But family members, and particularly mothers, did not, ultimately, feel let off the hook. After all, if genes are combining with other things - such as divorce, or trauma, or drug-taking - then couldn't you or your family somehow have done something to prevent these other things from happening? As one mother said wryly, as she ran through all the things that she might have done that could have led to her daughter acquiring schizophrenia, "I suppose mothers blame themselves for everything."

What consequences can we draw from these interviews? First, the perspectives of the mental health establishment and those of family members do indeed diverge. The optimism of the former (which likes to believe that the new biological models of schizophrenia will dissolve blame and guilt) is not whole-heartedly shared by the latter. Or, to put it another way, we should not assume that the apparent triumph of models of disordered brains and faulty genes has removed the guilt and blame from the mother. Mother blame - as anyone who looks carefully at our culture today will immediately recognize - is a very tough phenomenon to extinguish.

Secondly, we found that the time has come to open up difficult conversations about schizophrenia. It is frequently assumed that family members and people with a diagnosis of schizophrenia are at loggerheads in terms of what causes this form of mental distress. To caricature the situation: the family member is far more frequently imagined to be a cheerleader for the genetic or brain-based model of schizophrenia than the service user is.

Service user organisations and other social movements (such as the Hearing Voices Movement) have argued for many years that research investigating the causes of what we term schizophrenia needs to pay much greater attention to experiences of trauma, violence, abuse and suffering - both inside and outside the family.

The mental health establishment, in contrast, often keeps schtum on such issues - no doubt in part to avoid being accused in any way of 'family blaming'. For example, the NIMH webpages do note that 'many environmental factors may be involved' in causing schizophrenia, but mention factors such as 'exposure to viruses or malnutrition before birth' rather than the potential contributions of experiences of abuse or violence. However, the people we interviewed offered nuanced and multi-faceted accounts through which to explain why their relative had developed schizophrenia - accounts which did include the potential contribution of trauma and experiences of violence.

Our research shows that it is far from clear whether talk of genes and brains will be able to jettison mother blame in relation to schizophrenia. It is also far from clear whether family members even want to claim straightforward biological models of schizophrenia.

The time is right to build on the shared ground between people with a diagnosis of schizophrenia and their families. We need to find ways to pursue difficult conversations about how processes within society - and that can mean processes within families, too - can contribute to experiences of distress which we call schizophrenia.

The real challenge is to do so in ways that move beyond simple, black-and-white models of victim and perpetrator, of the one who has suffered and the one who should be blamed.

The long and enduring history of mother blame - both in relation to schizophrenia, and within culture more broadly - should warn us of the size of the challenge ahead.